I have started to post several times, but found my emotions and ideas expressed more clearly by others, such as Lindy, AJ, Fiona, Carey, Paula, and Greg. I wonder, too, about all the blind copies and PMs going on behind this passionate thread. Against that mysterious and dazzling background, perhaps I can try to address Debi, who I may have met once, about the chasm that separates us and the bond that binds us.

Madam,

As long as you hold any compassion for us, we are sealed together as one. You want our suffering to stop, so much so that you have chosen to work in the field of managing discovery and change. If nothing else, you have changed the face of clinical investigation forever with your clear thinking and your aggressive approach.

I pause, listening for the phone, looking for an email. Silence. Nothing guides me but my own hopes, hopes that we can form a partnership, a team whose power will be unprecedented.

Dear Lady, I don' have a job, like you do. When I retired there was no celebration, no review of accomplishments. I had just missed a promotion by three points (whatever that means) because I couldn't organize my material properly and "didn't care" about the spelling--I, who had been always perfect on that front. The loss of my career was bitter, so bitter that I can scarcely enter the room in my own home where I was a telecommuter for the last several months of work. Though I am told to be optimistic, there I face a failure that will never be redeemed by another, better position. My fine mind is disjointed and sloppy, and I must take baby steps where once my stride was sure.

Do I need to mention that I also lost income by retiring? That my medications cost $15,000 a year and that, even with the best private insurance and Medicare, they cost me thousands every year? Without a devoted husband who is working to age 66 to provide me with necessities and computers, I would consume my entire income on health care alone.

You may be accustomed to thinking of poor people as ignorant, but in this forum you will find many minds finer than mine, crippled by the “nonmotor” symptoms of Parkinson’s, but still perceptive and eloquent, trapped behind still faces and choppy sentences when they speak.

And that is where the disconnect is. We do not look like people of your class and station, especially after being ravaged by PD for a decade or more. We look and feel worn down and impoverished. But I read the medical literature twice a week, and I understand a great deal of it. I am not a doctor, but I can see, and I can read, and my intelligence, behind my symptoms, is as acute as yours.

Consider also, gentle executive, that I was not born the day you discovered me and my kind. I have experience in fields that would astonish you if we talked over lunch, although you might have to ignore my spilling food on my front and interrupting you frequently--both symptoms of my case of PD. If we do have lunch, though, you will need to come here to my humble home, because I don’t drive beyond my neighborhood any more due to poor reflexes and the inevitable inattention to the task.

Why is it so hard to understand our “nonmotor” symptoms? We have a global brain disorder, not just a bit of motor impairment. We’re not crazy, and we’re not stupid, we just appear to be. Is that so difficult to comprehend? Oh, I remember now that you are in partnership with a person with PD who is eternally optimistic, a pose that most of us can’t afford to assume. There’s that dollar thing again.

Well, it’s been nice chatting, and I hope you will learn to see the experienced, skillful minds behind the motor and cognitive symptoms and to tolerate the emotional manifestations. Our brains are dying, but our minds are intact. With a little accommodation, we are able to take your achievements even further if you will only see us as like beings instead of lost ones.

All the best to you.

Jaye
named "Outstanding Research Volunteer"
by Johns Hopkins Medicine

more watery eyes..thank u.

paula

I dont post here often but I read daily.....mainly I guess because my words get all mixed up and usually end up sounding like gibberish. When I was 28 years old I began to notice something just wasnt right....my right thumb twitched.....it was difficult to write....everyone thought I was mad all of the time because of the blank face....finally after 2 years I went to the Doctor....fearing a brain tumor or something....he admitted me to the hospital for 2 days of testing for all kinds of stuff......on the 3rd day he came into my room and stated...."I'm sorry, but it looks like you have Parkinson's Disease".......and I said..."Why are you sorry and what the hell is parkinsons" I guess what I am trying to say is this.....I am now 58 years old so after struggling with this disease for 30 years I think I may know just a little bit about "Parkinson's Disease". I guess that is why all those researchers and such are camped in my front yard...I dont know what my point is....I am just angry.....this damn disease has quietly stolen my life me....and I am mad as hell !!!!!!!!!!!!!

...I don't have another 30 years listen to "a cure is just around the corner" or " with all of the new meds it won't be too bad" to this I say BULLSH**

Dear all,
Good Morning.
I posted my first message in this thread asking Paula about the conference purely for financial reasons (lack of funds), I just wanted to share a hotel room with someone from this forum who might be going. What a turn it took.....
So many of you expressed your emotions, anguish, disappointment, anger,frustration, distrust.......I can go on with more words to describe your feelings. It is a testimony of what PD can do. I am now afraid to read more. I am relatively new to this PD world and too scared to think what might be in store for me.

While reading this thread, the picture that came to my mind was from my childhood, how my home town looked after a hurricane. It was totally unexpected, the whole town was mercilessly destroyed by the force of winds and water, paralyzed but the spirit of people intact. That hurricane was one the things I feared most in my life and now PD seems like that experience, instead of 3 days, its longer. I may be rambling here, but it just shows how troubled I am and how hopeless I feel right now.
Thanks for listening.

girija

This post reflects the sad revelation that can come from talk that has such time limits reflected in the responses. They can take a turn to personal and a debate on who is the most qualified to answer or suffered the most losses from Parkinson's and that is so unfair, I feel sorry for Debi for ever attempting to come here and share her opinion on what she deems MJF has accomplished and what it wants for the future.

Personal egos are so touchy and they always interrupt the flow of anything or anyone wanting to discuss the fact that a cure or even a treatment is the ultimate end for all. You will only get this from activism and no one person is going to do it without all joining in. The subject is not Parkinson's it is a cure or treatment for Parkinson's.

There is a way to work for the good of all whether they be newly diagnosed or late term educated or not and only willilng to offer whatever they have.

Surely all should be made welcome and whatever they say taken as there opinion and welcomed as well.

It's the cure folks......................that's all it is

gotta jump in here. girija, i've been tormented about portraying the reality of advanced pd. i can't tell you how much i beat myself up about these posts and tell myself to get the hell off the board,. it's an addiction too and soooo hard.

i know your post was completely innocent. and i don't know what to say to you about your fear, other than to tell you that everyone is different and you may not get that bad. i can't lie to you. you know the pitch eat well, exercise, etc. and that's true.

i used to be able to keep this at bay, and actually i am doing better - truly think i was starving but i still need all the meds. so there seems to be rooom for improvement at all stages or at least while you can still function.

one way to cope for me has always been thru advocacy projects. i was interested in exploring the interactions that are being created between business, foundation and patients. it doesn't take long to realize that they don't understand us, they don't deal with the abnormal and we are abnormal. we respond with emotion.

but it wasn't the manganese......when are they going to start putting names of chemicals out there?
gdnf denied. they won't stop and treat.....

there lie the reasons for distrust and fury

could you change your fear into fury? but i wouldn't recommend the level of intensity that comes from inside me.

dbiker, your point was crystal clear .....lots of research, no patients. thanks for taking the time to post that.

it's always the path of MOST RESISTANCE that we must travel it seems.

don't give up, you can live with it. may be we should consider something social online once a month, like games or something. my family spent many years in denial and stress, the peace has finally come. i got thru this terrible time because we got together off the board here, still do, we had our own social world. this made such a difference. we talk by phone.

coicidentally, girija, i live in florida and have been thru a hurricane or 15. one time we evacuated and kept drving all the way to peg and brenda's in Tennessee.

i'm here anytime to talk. we need distractions to survive. so maybe we should create some. i won't give you empty words, but i am ready for some levity. oh no one plays here......scrabble?

best to you,
paula

"I've never had advanced pd before."

Thank you, Debi.

You say that whether or not MJFF is achieving its goal of derisking preclinical research is best evaluated by the venture capitalists and pharmaceutical companies who will be taking those risks.

However - maybe I am wrong, but it seems safe to assume that all preclinical research is not created equal and that the assessment of the worthiness of investment in any particular area is somewhat subjective. For example, venture capitalists and pharmaceutical companies might be more likely to evaluate worthiness based on potential market share or size, whereas someone with Parkinson's might be more likely to evaluate worthiness based on potential for improvement in quality of life.

Therefore, deciding which areas of preclinical research should be focused on for derisking would seems like a natural fit for input from the Patient Council – what do you think?

Ok, I'm back - had to take a breather for a moment.

Rosie, thank you, I think that's what I was trying to explain but took nine times as much space to not really put it as well as you did.

Well, one thing that this thread does make clear, at least to me, is that there is a lot of pent-up feeling among PWP that we don't seem to have had a chance to express to the powers that be, shall I say. So yes, MJFF and Debi, who was the only one brave enough to actually try and deal with us, sure got turned into a lightning rod. I empathize, but we had to start somewhere, and while one organization cannot represent all and they're all different, they need to start hearing this huge torrent of...perspective...And MJFF happened to be first in line through being open.

I think the rage and fear and despair about being sick are relevant to organizational entities - why should we pretend that we feel any other way than we do, and that is why the structure and tone of work done on our behalf is so important.

double post

thelma,

not sure whom you are referencing but making this clear;
my point was that patients should be qualified and then i made the mistake of using the pipeliners as an example. i am going to let the rest of the story speak for itself. check all the posts tho, because i do concede, apologize, and am slo to grasp the whole picture because i have out of personal necessity had to skip and skim only. realized last night what i think is perceived as a competition? dunno what to call it but i clearly stated that i was not saying that pipeliners were the only ones. i'm not looking to be on any advisory board.

paula